PKU.com Community Discussion Forum Adults and PKU Being deprived of your medication. Reply To: Being deprived of your medication.

#8613
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Emsilly24
Member

Hey there.  I just want to say that EVERYONE who has PKU (or practially any health issue, for that matter) knows somewhat what you are going through.  Please know that you are not alone!  The entire PKU community is on your side! And even though our condition is rare, we are big at heart.

The tough thing about PKU is that it is hard for people to understand how important our diet is because we don't have immediate/attention grabbing reactions to not getting what we need.  If we immediately collapsed after eating something high in protein or were physically unable to move after missing a dose of formula, people would be aware.  But our negative consequences are usually things only we ourselves can see and feel.   Raising awareness is definitely something that should be done.  The internet is the quickest way to raise awareness these days.  Ever consider making a video and posting it on youtube?

Also, what is your insurance situation like?  If you have health insurance it might be worth the fight to argue endlessly with them, Katie, do you have any light to shed on this?  As of right now, even though I'm 20 years old, I'm still a student and dependent so my dad fights my insurance battles for me (I am on Camino Pro as well).  But it's only a matter of time before it comes down to me….

I apologize for the length of this post and I hope it helped or at least encourged you in some way.  Please do not give up!  If you keep drinking the formula you will feel SO much better in everything that you do.  Have you gotten holiday gifts yet?  Consider asking family and friends for donations for formula as gifts.  Make sure your loved ones know how important this is to you, you might be surprised what they would be willing to do to keep you healthy.  Best of luck with it and please take Katie's advice- enjoy your holidays!

 
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